Grieving the Life I Had Before Chronic Illness

Grief is most commonly known as the psychological distress experienced after losing a loved one. However, any loss can bring about the anguish caused by grief.

Many psychologists have established five key stages in the grieving process but in reality, grief is as unique as the person experiencing it. The five most commonly identified stages of grief are denial, anger, bargaining, depression and acceptance. Categorizing grief in five stages is definitely an oversimplification of a messy and complex emotional process, but these five stages will be experienced in some sort of intensity. Although one person can definitely jump all over the place in their grieving, from depression back to anger, from bargaining back to denial, eventually with acute loss most people reach some sort of acceptance. It’s not that they’re “over” the loss of a loved one, but through time and healing the initial intensity of the shock and grief naturally lessens.

But what if the event that brought about the grief never truly ends? 

The book “POTS – Together We Stand” talks about exactly this. I highly recommend this book for many reasons. For one, it’s informative and helped me navigate my journey to finding a cause for my POTS. Second, there is a fantastic chapter about grief and chronic illness that completely opened my eyes about the realities of the emotional rollercoaster I was experiencing.

Grief is an intense psychological process brought on by a loss. I don’t know about you, but I lost everything in my life the day I got sick with postural orthostatic tachycardia syndrome (POTS).

I lost my health, my ability to stand up, to think clearly, to see straight, to run, to hike, to work out, to go out, to feel normal. I lost my ability to do the things that constituted my every day: going to school, going to work, living alone, going out with friends, my ability to drive. I lost my sense of self; I previously felt strong, confident and indestructible in my daily life. I was fit, I was active, I was healthy. I lost my sense of autonomy – the belief that I could do anything I set my mind out to. I lost my sense of purpose and accomplishment; I lost my academic scholarship for school, my ability to read and learn, my drive. I literally lost everything that made me, me.

If you have a chronic illness, I’m sure you relate to the feeling of intense loss. It’s an incomparable anguish I hate that you can relate to. You were suddenly, traumatically, robbed of life and everything that gave your life meaning. And for many of us, we continue to be reminded of this loss every day.

I began grieving my old life before I even realized that was what I was doing. I was going back and forth between the denial and anger stages when I came across Michelle Roger’s chapter on grief. You know that feeling where someone eloquently describes exactly what you’re going through in a way you could never put into words? That feeling of being understood, having a name for it and knowing you’re not alone? Yeah, that’s how I felt after reading that chapter. The year 2014 was by far the worst of my life. It wasn’t just developing POTS that was traumatizing, it was losing myself. I didn’t know how to describe it to people but I know the words “you don’t understand” came out of my mouth more times than I can count.

If you’ve ever been unfortunate enough to lose a loved one, you are all too familiar with the stages of grief. The problem with losing your health is that it’s a daily loss, not a one-time thing. No grief process is linear, clean and tidy, but you can expect to find some level of relief with time when you lose a loved one. But each day of living with a chronic illness is a reminder of the loss. All your friends are going out but you don’t feel well enough to? A reminder of when you could go out. Your grades feel the consequences of your brain fog when you used to be a straight A student? Another reminder of your limitations.

But I didn’t write this to remind you of everything you’ve lost from developing a chronic illness – no, you don’t need another reminder of that. I wanted to write this so you know you’re not alone, so you have a name for the emotional rollercoaster you’re experiencing and so you have hope that some level of acceptance and reconstruction is possible.  

I still find myself in a process of grief if I get into a big flare but it’s nothing like the intense and debilitating psychological distress I experienced from 2014-2016, which looked a bit like this:

Denial 

For the first year after I became sick with POTS I was incredibly depressed, anxious and fearful. I clung to the idea of my old life as if it provided oxygen and needed to feel like I used to. I would often say things to my mom like “I need this appointment to get well because I need to go back to school next semester. I need to, Mom, I can’t live like this.” I felt suicidal at the idea of not going back to university. It wasn’t that I was that obsessed with university per se, but it was a concrete example of an ability that made up my daily life and identity.

For the first two months it never crossed my mind (but it could have been a subconscious fear) that I had a chronic illness and wouldn’t get better. Doctors suggested that my symptoms might be a result of a prolonged flu, or a cyst that once removed would relieve my symptoms, or something that was chronic but 99 percent manageable with the right medication. In my mind I was going to get better once I found out what was causing my symptoms. Even when my mom found out what POTS was, through her own research, and was convinced that it was what I had, I believed that certain medications would cure me based on a blog post I read at the time. I distinctively remember when my mom told me what POTS was and showed me a bunch of articles. My heart sunk. I clearly remember saying, “So I’ll never get better?” It was the first time I couldn’t deny the evidence that conflicted with my current reality: that I was going to get 100 percent better. But despite the intense fear I felt when reading the word chronic, I researched until I found something that reinforced my previous denial: a steroid often used to treat, not cure, POTS would make everything better. I remember telling my mom, “Oh, so POTS is an issue with standing, well then I won’t stand much until I get prescribed this medication and then I can go back to school.”

With denial often comes isolation. With me, isolation plagued my life through the first four stages of the grief process. In the beginning, I dropped off the face of the earth and updated people on social media but never invited people to come over to see me or keep me company. I remember an aunt of mine wording it perfectly: “I’m sorry I didn’t visit more, I just kept thinking it was an acute thing that would go away.” Whether you don’t want to bother others, you don’t want people to see you like that, or you’re just focused on “getting better” and think it’ll happen any day now, isolation can be a huge issue when living with a chronic illness.

Anger 

Oh boy did I get angry. Within the first few months of developing POTS, I placed all my hope on upcoming specialist appointments. I was convinced that once I saw (insert specialist here) they would figure out all my issues, put me on the right medication and have me on track to functioning normally again. The first specialist I saw was a cardiologist – I placed all my hope in this appointment patiently waiting for its arrival. When the appointment came and my mom suggested a diagnosis of POTS, he said there’s no way I could have POTS because my blood pressure didn’t drop enough (this is a myth) and that POTS was just a diagnosis doctors gave when they didn’t know what else was going on (also untrue). On the drive home from that appointment I cried, I screamed, I hit my hand on the passenger side door and lost it. This was the first of many doctor appointments that left me with intense anger that I previously believed I was prone to. Once it was so bad that I yelled at my mom the whole drive home (and still feel guilty about this), went up to my room, slammed the door and screamed and threw things until my throat hurt and I eventually fell and traded my rage for tears.

Your anger might not look like mine did, your anger might look like an existential thing – asking God how He could allow this, or it might look like resentment and lack of forgiveness. No matter what it looks like, anger is a healthy reaction to trauma, loss and hopelessness. You have to allow yourself to feel the anger and express it in a healthy way.

Bargaining 

Bargaining often takes the form of “what if..,” “if only..” and “why me?” Bargaining is an attempt to change the outcome or torture ourselves with ways in which we could’ve avoided this outcome. For me, I bargained with God the first day I became sick. I remember lying down after what I now know was my first low blood pressure seizure and praying that I would devote my life to God and do anything if He were to take away this suffering right now. I guess bargaining came before denial for me, which is further evidence that grieving isn’t always linear.

Bargaining often involves bargaining with a higher power, trying to make sense of your suffering or trying to figure out reasons for your suffering. For example, for a couple of months I was convinced that seeing a new chiropractor caused what I now know is POTS. What I conveniently forgot to remember was that I started seeing a chiropractor because my severe chronic neck pain and headaches (that I had for my whole life) were getting worse and that symptoms preceded seeing the chiropractor. For months I thought about “if only I didn’t see that chiropractor..” or “if only I went to the doctor when I fainted that one time months before my first POTS attack maybe they could’ve prevented this…” etc. In this stage, people often try to hold onto any last bits of perceived control over the situation and when they find this ineffective, they often fall into depression.

Depression 

When your previous attempts to make sense of the situation leave you at a loss, and you’re forced to feel the magnitude of the loss, depression sinks in. There are two main theories of depression: 1. depression as illness (medical model) 2. depression as human suffering. In psychotherapy, counselors who believe in the first model see the depressed individual as a patient, while counselors who believe in the second model see the depressed individual as a client. As someone who is studying to become a counselor and has personally experienced depression before, I understand and believe in a holistic approach between the two models, especially when it comes to grieving.

When someone is grieving the loss of a loved one or relationship, depression is often seen as a temporary stage (although this isn’t always the case) and would therefore fit into the second model of depression. However, when the loss is ongoing, the grief is continual, then the depression may switch from situational to a chronic.

My depression was intense, my depression was mind-numbing, my depression was something I never experienced ever until developing a chronic illness. I was suicidal, I was numb, I was barely alive. However, even in the depths of it all, I didn’t identify with my depression. I never called myself depressed and I didn’t (still don’t) think I have a mental illness. I met the criteria for depression, I had all the symptoms of depression and I was on an antidepressant, but I still would not call myself depressed. (Call it denial but I needed to have hope that I was in control of some aspect of my health. I needed to believe that the mental suffering was temporary.) Why? Well, I knew that my chronic illness caused my depression and truly believed it was a result of intense suffering and that I would be relieved from my depressive symptoms one day (I was right).

However, the grief cycle is continuous with a chronic illness (unlike most other losses), and therefore the depression might come in waves (including remission). Unfortunately, the continual nature of the unique grieving process associated with chronic illness creates a perfect storm. What once was human suffering has now changed your brain. Trauma can also change your brain waves to the extent that it shows up on an EEG (although medical PTSD calls for another blog post that I’ll get to one day as it’s not part of the grieving cycle per se).

The mind and body are connected; what affects one will affect the other.

Whether your depression is something you identify with (which can be helpful for many people) or not, and whether it’s long-lasting or temporary, its presence can be expected during the grieving process. You are not alone in your depression and it is completely understandable.

I believe chronic illness creates the perfect storm for depression: isolation, lack of abilities and emotional stimulation to help provide positive aspects to one’s life, brain fog, chronic pain and a loss of self.

Approximately 6.9 percent of the U.S. population has depression while 25 percent of cancer patients, 10-27 percent of post-stroke patients, one in three heart attack survivors, one in three HIV patients, 50 percent of Parkinson’s disease patients, and 8.5-27 percent of people with diabetes experience depression.

Acceptance 

On January 20th, 2014 I became bedridden with POTS and remained bedridden and/or housebound for all of 2015. In 2016 I experienced some level of acceptance in the sense that I understood I was sick and probably wouldn’t get better and that this was my new normal. I no longer tried to gain my old life before I developed POTS but instead tried to feel as well as possible and recreate a life within my limitations. Thanks to brain fog, I completely forgot what it felt like before I developed POTS which helped me move forward in a strange way. I couldn’t strive for something I couldn’t remember. In 2016 I identified with sickness but I became very depressed – I was surviving with chronic illness but I definitely didn’t feel like I was living.

It wasn’t until the summer of 2017 that I began to truly accept my life with a chronic illness and myself and reconstruct a new life. I would do anything not to be sick anymore but I no longer wish I was 20-year-old me living the life I had pre-sickness. I’ve learned and lived too much since then to want to take that back. Once I was able to stop holding onto the rear-view mirror I was carrying around everywhere, I began to appreciate and not resent my current life and myself in all of my brokenness.

How did I get here? Slowly and with a ton of support. You know those tiny decisions you make each day that you swear aren’t making any difference whatsoever? Those are what changed my life. They do make a difference. After realizing I had medical PTSD and being put on an antidepressant, being on proper POTS treatment that stabilized my condition to the point that I could start doing a POTS exercise protocol and fly to the POTS Biofeedback Center, making enough progress to the point that I could move out and live on my own, realizing I had a thyroid tumor that contributed to my weight gain in 2016, treating that thyroid tumor, slowly going back to school, being left by a really toxic boyfriend in the midst of severe codependency which influenced me to start seeing a counselor regularly and lose the weight, to seeing a counselor every week for eight months (and still going). I saw counselors here and there throughout my life when I was in crisis mode but never saw one frequently. I truly believe that the frequency of my appointments, the trusting nature of our therapeutic relationship, and the daily renewal of my heart by God is what brought me to this place. A place of self-acceptance, grace for myself, freedom from codependency and acceptance of my illness and the role it plays in my life and relationships.

I haven’t “arrived.” I’m not done. That’s the thing about having a chronic illness, the guilt is as chronic and unpredictable as the chronic symptoms themselves. On a bad day, or in a flare, you will still find me grieving, but I do it with grace and not guilt. I can now look at old pictures from my healthy days without sadness, I no longer have resentment about my illness or feel like I need to catch up to all my healthy friends. I have found my purpose – to glorify God in the mundane. My inability to chase after the things of this world (career, adventures, travel, etc.) has made me realize how unfulfilling that chase truly was. I no longer feel burdened by every “30 things to do before you’re 30” article and have peace with the fact that I might not ever do any of those 30 things but my life is still fulfilling and purposeful.

I still see my counselor weekly and still have to be very intentional about prioritizing my mental health. Psychologist Michelle Roger truly believes that talking about this process openly, vulnerably and without judgment is how we can move throughout these stages and find fulfillment. I know that counseling can be expensive and not always an option for everyone. Although my family is financially secure, I couldn’t justify spending $140/h. When someone recommended my current counselor at just $50/h, I found this a lot more reasonable and doable. I believe this is only the beginning of my self-acceptance journey and I hope you’ll join me in this journey toward truly believing that your life is worth living. You will see better days. You don’t want to go back to pre-sickness but make the most of your current situation. You are worthy of love. Your purpose in life isn’t to be perfectly healthy and productive, it’s so much more than that.